Lupus: Marla’s Story. Part 2.

You are your own best advocate.
Be proactive when dealing with issues regarding your health.
Ask questions and be informed.

Lupus is an autoimmune disorder most often diagnosed in people 15-45 years old. Anyone can develop lupus, but women make up 90% of cases.  According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, lupus is most common in women of African-American, Hispanic, Asian, and Native American descent. In this regard, Marla is representative of the 16,000 Americans who develop lupus annually.

In Part 1 of this brief series, Marla shared the long road from obscure symptoms, to crisis, hospitalization, and diagnosis.  In this installment, she discusses the ways her life has changed as a result and how she is supported on her journey.

Marla at a party in 2010
Marla at a party in 2010

My life has changed quite a bit.  I now take medication every day, which I hate.  Some medication I may have to be on for the rest of my life as a maintenance kind of thing.  Because lupus has no cure, all you can do is treat it and manage it.  Boooo!!! 

I was in denial at first about my diagnosis, but not because I couldn’t accept it.  Everything I would read would list these typical symptoms that I didn’t have.  It wasn’t until November of 2012 that it all became real. 

Out of nowhere, these itchy skin rashes popped up all over my legs and arms.  I had a constant reminder every day that I had lupus and I still have these rashes.  They have left hyperpigmentation that has yet to fade. 

I now have a sensitivity to the sun, and this is a common symptom.  So, I have to avoid the sun as much as possible. This summer, no shorts for me .  I have to wear sunscreen every day (yes, black people need to wear it too).  This has been extremely hard to deal with because I love the sun and now I’m afraid of it.  So now, in addition to the rheumatologist, I also see a dermatologist. (Really tired of all the “ologists”).  I’ve lost a little hair.  I am also experiencing more than usual fatigue, which is also a common symptom. 

Most recently, and I say this with a whisper, I’ve noticed a significant decrease in my libido. I don’t know why, but I’m thinking it’s a combination of the medication as well as the psychological trauma and stress of this journey. I haven’t spoken with my doctor about this yet, but I plan to.  I mean, I’m only 38.

The hardest thing I’ve had to deal with is the not knowing what could happen to my body next.  I didn’t know these rashes would appear, they just did.  Will I have the joint pain that is characteristic with lupus?  As a former professional dancer and I’m being candid here, I think that would devastate me.  I know that I would prevail, but that would be really hard. 

Marla (who made her own costume) as Puss in Boots in 2011
Marla (who made her own costume) as Puss in Boots in 2011

Family and friends have been amazing.  In addition to educating myself, I have had to educate them.  They can be of more help if they know some of what is going on.  Some of my friends have referred me to friends they know who have lupus.  Talking with them has been a tremendous help.

I have felt alone with this disease and still do sometimes.  Lupus manifests itself differently in each person.  For me, right now, it is affecting my skin.  So being able to relate to someone else has been instrumental in the processing of this journey.  

Friends and family members have also turned me on to alternative methods of healing.  I’ve incorporated acupuncture, adopted a gluten-free diet, and tried to reduce the stress (a major cause of having a flare-up).  Therapy – I know that we aren’t supposed to talk about that, but therapy helps.  Having someone not emotionally connected to you provides a different type of support.  I have also entertained the idea of joining a lupus support group.

What do you want people to know or understand about lupus?

I would like people to know that lupus is a quiet disease, kind of a mystery disease.  Most times, no one would know you are living with it.  The symptoms aren’t in your face.  For me, I can cover my arms and legs, so no one would know I have these rashes.  We have all said we are tired, we say it all the time.  But for someone with lupus, the fatigue can be extreme. Those who don’t have it or understand it may not take someone saying they are tired as seriously as they should.  It’s not laziness, it’s fatigue.

There is a quote by Maya Angelou that I love: 

You are not your lupus, and life continues.  You just might have to make some adjustments.  There are going to be bad times, but also good times.  It’s the looking forward to the good times that help you through the bad times. 

I have learned a lot about myself during this journey.  I learned how strong I am and how far I can be pushed and still succeed.  But at the same time, I learned that I didn’t have to be so strong, trying to get through this alone.  I learned how to ask for help.  And, I learned how to truly love myself.

Marla’s favorite lupus-related resources: 

  • Organizations/websites:
  • Android apps:
    • Lupus Connect (discussions, articles)
    • The Lupus App (track prescriptions, doctor’s appointments, symptoms)
    • EPA’s SunWise UV Index (for those with sun sensitivity, tool to know how strong sun is)

Marla’s walk for lupus research is October 19, 2013. Did you miss Part 1 of her story? Read it here.